I went G F and symptoms went away immediately.Have stayed gluten-free but for the past 3 nights the symptoms have come back.There is no cross contamination.I do my own cooking,and do not eat anywhere but at home.I have been so very careful
and again I am so miserable.Can anything else be diagnosed as celiac disease?

My experience was: when I first went gluten-free, I felt immediately better and had several pain free hours. Then with even the tiniest slip, I felt even worse than before. As I scrupulously gluten 'sleuthed' to eliminate all sources, I STILL had regular symptoms. Since I had done tests with Enterolab (which included a milk sensitivity test--although I used lactaid supplements for lactose), I wondered if I was sensitive to casein as well as lactose in milk. So I did my own dairy free test during which I was symptom free. When I tried a tiny bit of milk, I had pretty dramatic symptoms, which just confirmed my E-lab results of casein antibodies (as well as gluten antibodies). Then I substituted soy products (milk, yogurt, margarine) for dairy and experienced milder versions of my usual symptoms. So I'm now gluten free/dairy free and soy limited (tiny amounts in a canola based margarine are okay when I'm having an otherwise painfree day).

So other intolerances as well as gluten intolerance may cause similar symptoms. But if you did blood tests (regular lab) or stool specimum tests (E-lab) which indicated gluten antibodies/autoimmune reactions, you definitely have celiac, with other allergies/intolerances thrown in. I've read that the longer celiac goes undiagnosed, the more likely you can develop other allergies/intolerances.
BURDEE

I have actually have a fairly good week for a change. I am still a pessimist and waiting for the honeymoon period to end . We are going to travel to Las Vegas and Laughlin in a few weeks and I am nervous. I don't want to get stuck in the hotel room. I guess I need to start contacting the hotel restaurants to find out what I can have. First year without a reuben sandwich from the Luxor deli.
Do the symptoms ever really go away or just become more manageable?

I've been researching and came up with SIBO (small intestine bacterial overgrowth)....I made a post in this forum on it, but here's an article.........this could be why some of us aren't better...this article is from Celiac.com

Bacterial Overgrowth of Small Intestine Common in Treated Celiac Disease See your ad here!

T-Shirts:

Dig Liver Dis. 2002 Dec;34(12):846-50.

Celiac.com 07/12/2004 – In a study designed to determine the causes of continued gastrointestinal problems in celiacs who are on a gluten-free diet, Italian researchers looked at 15 celiac patients who continued to experience symptoms even after 6-8 months on a gluten-free diet. Histology improved in all patients after this time so refractory celiac disease was excluded as the cause. The scientists performed AGA and EMA tests, stool examination, EGD with histological examination of small bowel mucosa, and sorbitol-, lactose-, and lactulose H2-breath tests to determine a possible cause of the patients’ persistent symptoms.

The researchers found that one patient who had Marsh II lesions was fully compliant with his diet but had mistakenly taken an antibiotic that contained gluten. Two of the patients had lactose malabsorption, one had Giardia lamblia, and one had Ascaris lumbricoides infestation. Ten patients were found to have small intestinal bacterial overgrowth (SIBO) by lactulose H2-BT. The doctors prescribed a diet without milk or fresh milk-derived foods to the patients with lactose malabsorption; and treated the patients with parasite infestation with mebendazole 500 mg/day for three days for two consecutive weeks. The SIBO patients were treated with rifaximin 800 mg/day for one week. All of the patients were re-evaluated one month after treatment, and all were symptom-free.

The researchers conclude that SIBO affects most celiacs who have persistent gastrointestinal symptoms after going gluten-free.

You described me to a tee!!!! I am a mirror image celiac to you... Everything you have, I have, exactly.....

It is so embarrassing sometimes at work, my stomach is so loud everyone in the room can hear it! But they know me by now, and are quite supportive....

Did you ever try Immodium? If so, did you have any luck with it? I am giving it another try now that I have been gluten free (for 1 1/2 years) along with sugar free, dairy free, and caffeine free, I thought maybe the Immodium had a chance to work now. I just started taking it today, so I will let you know how it works...

My GI dr. screwed me up actually. He prescribed Lomotil to me for the diarrhea, and after two reactions after two different trys, I found out it contained gluten!!
Sheesh! You would think a GI dr would know better.....

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.Endoscopy also showed numerous stomach ulcers, have started taking Losec.

No I never tried the Immodium, did not want to have "more problems" if you know what I mean, but yes please let me know how it works for you. I also went caffenine free on the advice of my Rheumy, she thought it may have something to do with the diarrhea I had, but it didn't help but I remain caffenine free anyway

I have decided to see another GI doc (for a 3rd opinion) and maybe he can give me some answers. From what I have read I think I should be 100% better by now, I NEVER cheat (too afraid of the symptoms) and rarely do I have the cross contamination, my kitchen is 100% gluten-free and I don't eat out much. So maybe he can figure it all out and I will have some answers soon! I will let you know!

One thing I have been doing different is taking 1/2 tablet of Levbid, it seems to help with the abdominal pain but that's about it.

I know that you are disappointed about the SIBO, but try to think that this
is one less thing to worry about. I think you are on the right track but you
need to give it more time. I noticed a big change when I gave up dairy
completely. After 9 mos I am feeling pretty good, not quite "there yet", if you
know what I mean. When I think about last summer it is all a blur. I laid
in bed in a fetal position, in pain, and afraid to go out. If I went out my
husband had to drive me, I was so afraid of having a "spell". Just be
patient and don't give up, you have come a long way in a few months... :

i get cramps everyday w/o my meds, but if i maintain the diet and meds then i seem to be alright almost immediatly...just gotta stop cheating...someone wrote back to me that they don't get any symptoms too when they cheat, but is afraid of getting cancer...so i don't want to be put in further harmful situation...

I have been gluten-free since January 04. It took 3 days for things to change. The first two weeks I only ate veggies, and fruit, as I still couldn't tolerate meat. Then I started to introduce meat, breads and pasta and snacks into the diet.
I am 55 years old, and have extensive damage of a lifetime of eating gluten. Dr. said I would be one of the unforunate ones and it would probably by five years to repair all the damage, much will never repair itself, as some of my villa was shaved.
Last December, I couldn't tell you my name I had brain fog so bad, I could barely walk. I was bacially waiting to be called home!
I am so improved, I really didn't know how sick I was. I no longer am on any meds, and have very little pain in the joints and muscles.
For those who are not improving, I would suggest starting over with the basic diet, make sure your kitchen is gluten free. You can also develop other allergies after going gluten free-your Dr. should be running more tests to see if this is the case.

I have to add, it took 14 years of Cat scans, ultra-sounds, x-rays, blood tests, and numerous Doctors before I was diagnoised. I have been on so much medication over the years, I could start my own drug store. I was so depressed from Drs. telling me I was crazy, and was making up the pain in my head. Guess you know they all got letters from me-I tried to be nice!

I can't say I don't have reactions from time to time. Eating out is so dangerous, and prepared foods are just as bad. Sometimes I get a little down when I can't grab something to eat on the run, but, I never want to feel like I have for the last 14 years. You just have to plan ahead with Celiac. I try to set one day a week to prepare for the week ahead. I bake my breads and desserts, and plan my meals. Plus, I have a great support group here in town!

From a Celia who has had convulsions, anemia, big D, constipation, infertility, miscarriages, tumors and cysts, skin cancer, sinistitus, vertigo, Rhymitoid Arthritis, Degenerate Arthritis, severe headaches, poor vision, head tremors, early menopause, lose of strength, clumziness. Sure glad I am a postive person or I would never have gotten through this ordeal.

And remember, everything can't be related to Celiac. We will still get sick with other things. The diet isn't a cure all, just makes life easier, and may prevent cancers down the road, and give us a better life for now.

HI, MY DAUGHTER'S BEEN GLUTEN FREE NOW ABOUT 2 MONTHS AND WAS DOING PRETTY GOOD, ALMOST "NORMAL". AFTER SEEING THE GASTRO HE SAID I COULD INTRODUCE MILK PRODUCTS AGAIN SLOWLY AND HAVE HER TAKE LACTAID TABLETS WHEN SHE DID. I DID THAT AND SHE GOT SICK AGAIN! WE ALSO WENT OUT TO LUNCH AND AFTER TALKING W/HEAD CHEF I WAS COMFORTABLE W/HER HAVING GRILLED PORK LOIN AND SALAD. SHE'S STILL NOT BACK TO "NORMAL". IT'S NOT WORTH IT GIVING HER CHEESE OR MILK RIGHT NOW OR EATING OUT AT RESTAURANTS THAT DON'T OFFER GLUTEN FREE MENUS!!

Hi Lee:
Lactaid (for the milk sugar lactose) doesn't protect against the milk protein CASEIN. I used lactaid for YEARS while my symptoms got worse. Only when I abstained from ALL dairy (as well as gluten) did I start to get better. Listen to your daughter's physical symptoms and restrict all dairy, if that helps. The body never lies.
BURDEE

my 5 year old has been diagnosed with celiac disease. The doctor said she also is lactose intolerant. She has been gluten-free for 1 month, but still has stomach pain...no other symptoms. She also is type 1 diabetic. Can she continue to have milk products as long as i give her lactose tablets before hand? Dairy is a huge part of her daily diet since she uses this for her "carbs". Is it possible the stomach pain is from dairy....even with lactose pills? Also, she has been put on prevacid, flovent, and zantac,,,, is this excessive? The Dr. has her on this for the stomach pain (due they say to esonophils in her esophagus).